Re: Things that are emotional, and hard to talk about wit...

[Guest guest]

Kathy,

How true! When I was first diagnosed, my mother read what she got her hands on (most from the MS Society), and she was thrilled to realize that MS didn't always lead to death! At that time, I already knew that possibly living with MS could be worse than death. Not that I want to die, but I live with the reality. Just getting in and out of bed is so dangerous! A fall with a head injury is a real possibility. It's the little things that can be so difficult.

Back in the old days, I used to cook quite a bit and was a good cook, or so I was told. I don't cook much now since my hands don't work too good, and I can't clean up a mess. My mother bought me four, yes 4, cook books for Christmas! I guess I put up a good front! (She's the one I certainly can't tell any details of my life. She thinks everyone who asks about me is entitled to hear gloom and doom. She loves the drama and attention that it brings her!)

Seems the people closest to me are the ones who just can't handle things. At least not in a way that would really help me! Not that I want this to be about ME! It just is. I just want my relatives to tell people that I'm doing fine. If I need something, I'll let someone know. This life is tough, and I don't need the extra drama!

Marcie

In a message dated 12/30/2004 8:49:50 AM Central Standard Time, tbayuk@... writes:

Another wonderful story from the heart. As painful and sad a story as it is; it is the plain and simple truth. We are in this alone unless we are fortunate enough to have a good spouse (I do) or support group of friends and family. This is a very lonely disease and because in most cases there is no fear of imminent death, medical groups do not understand how horrible this disease is. I agree too that the MS Society (even here in Canada) is of no help at all.

God Bless you Tom,

Kathy H

[Guest guest]

Totally agree Marcie! I went out to church Christmas Eve and some

people talked to me like I'm mentally challenged???

I wanted to scream, " I'm still Kathy Huget and have the same brain and

same personality " . " This disease is not ME its just affecting ME. Had

to realize though that some people just dont know what to say when they

see you in a wheel chair; even if you are smiling and chatting. It was

actually my husband that was more offended by some people's comments

and reactions.

Fortunately have known many of them for along time and the ones who

made the weird comments are a bit socially challenged themselves. My

real close friends treat me no different than prior to MS. Sure they

sympathize and pray for improvement but nothing condescending. It is a

fine balancing act dealing with this socially. My Mom & Dad have had a

hard time too acknowledging how sick I am but then they live in a

different province so they dont see my digression day to day. Its

probably best that way; although I miss them all the time.

Kathy H

On 30-Dec-04, at 8:22 AM, marciemjm@... wrote:

> Kathy,

>

> How true!  When I was first diagnosed, my mother read what she got her

> hands on (most from the MS Society), and she was thrilled to realize

> that MS didn't always lead to death!  At that time, I already knew

> that possibly living with MS could be worse than death.  Not that I

> want to die, but I live with the reality.  Just getting in and out of

> bed is so dangerous!  A fall with a head injury is a real possibility.

>  It's the little things that can be so difficult.

>

> Back in the old days, I used to cook quite a bit and was a good cook,

> or so I was told.  I don't cook much now since my hands don't work too

> good, and I can't clean up a mess.  My mother bought me four, yes 4,

> cook books for Christmas!  I guess I put up a good front!  (She's the

> one I certainly can't tell any details of my life.  She thinks

> everyone who asks about me is entitled to hear gloom and doom.  She

> loves the drama and attention that it brings her!)

>

> Seems the people closest to me are the ones who just can't handle

> things.  At least not in a way that would really help me!  Not that I

> want this to be about ME!  It just is.  I just want my relatives to

> tell people that I'm doing fine.  If I need something, I'll let

> someone know.  This life is tough, and I don't need the extra drama!

>

> Marcie

>

>

>

>

> In a message dated 12/30/2004 8:49:50 AM Central Standard Time,

> tbayuk@... writes:

>

>

> Another wonderful story from the heart. As painful and sad a story as

> it is; it is the plain and simple truth. We are in this alone unless

> we are fortunate enough to have a good spouse (I do) or support group

> of friends and family. This is a very lonely disease and because in

> most cases there is no fear of imminent death, medical groups do not

> understand how horrible this disease is. I agree too that the MS

> Society (even here in Canada) is of no help at all.

>

> God Bless you Tom,

>

> Kathy H

>

>

>

>

>

>